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It has been very unclear what professionals had been consulted by DHSC in preparing their template. If it was Dr Miller that fits with what has emerged. What I am currently worried about is the apparent assumption by some ME/CFS advocacy groups that a community run service is an inevitable and...

It has been very unclear what professionals had been consulted by DHSC in preparing their template. If it was Dr Miller that fits with what has emerged. What I am currently worried about is the apparent assumption by some ME/CFS advocacy groups that a community run service is an inevitable and...

What I have seen of the draft template for service provision from DHSC is very vague about format. I don't recall it saying that GPs had a central role. But the only slide in the explanatory presentation that actually said what was to be delivered said 'multidisciplinary rehabilitation'. I have...

What I have seen of the draft template for service provision from DHSC is very vague about format. I don't recall it saying that GPs had a central role. But the only slide in the explanatory presentation that actually said what was to be delivered said 'multidisciplinary rehabilitation'. I have...

I agree with Utsikt. This seems backwards to me. If you have a group of overlapping categories as in a Venn diagram and in human disease, scientists and clinicians are interested in understanding the basis of the specific categories, not some arbitrary muddling of several categories. These...

Maybe it should tweaked but I think we have had this discussion already and my point was that the wording is actually exactly what it should be. It says nothing about blinding or placebos, just carefully designed controls in a trial - and a case study is a trial. If people do not appreciate the...

It's a thought but the reality is that individual case studies do not 'build up the evidence supporting a trial' unless there is some reliable controlling factor supporting the observations. When we started using rituximab we did 'case studies' in a sense, but we made sure that we were gathering...

actually it was 'significant' but very slight ;)

I don't buy this @SNT Gatchaman . A controlled trial can be refused by a regulatory body - in my day a DDX could be turned down - but the bar for refusal was high and I doubt any of the drugs currently used off label for ME/CFS would fall foul. Loads of people are being treated and nobody is...

I think they have started a thread here. The letter is ready for them to read.

That is the sub-text, yes.

I think it might be useful to copy my reply to Charles Shepherd here: Thanks for the comments, Charles, Perhaps I can take them in order. I am aware that resources are limited but my impression is that at present large sums are wasted on a rehabilitation approach inappropriate to ME/CFS...

Yes, I actually opened my analysis of prescribing in my email with that.

I think we can take that as read. the delivery plan research working group identified trials of re-purposed drugs as the top priority. The only problem was that nobody could think of anything to try, except naltrexone. The chief problem is that there are about 20 drugs regularly used on people...

We have had some constructive correspondence amongst ForwardME service working group members, with some focus on off-label prescribing. There are differences of opinnion but I have said that I, and it seems most members here, think sticking to no off-label usage outside controlled studies isthe...

The relative risks in that study look very compatible with reporting bias. Certainly nothing in the way of a major causal input. Almost all psychological research is as wooly as this and I think tells us very little. If anything it is quite a nice negative result indicating that premorbid...

I will send the current draft suggestion to ForwardME, indicating that it is work in progress.

But presumably it will depend entirely on what pathology is being treated? In most other situations I imagine that interferons are implicated in long term loops without actually producing symptoms themselves? Edit: I see the context is lupus, RA, etc. I think a longer time to response might be...

If interferon receptor binding is causing symptoms directly you would expect a rapid response. The model would be a TNF inhibitor which produces systemic symptomatic relief in a day or so. Interferons might be acting a bit more upstream so it might take longer. But taking longer tends to relate...

Nice to have you here. We have been digging away at this together here for about ten years now. It is always good to get a fresh mind interested. The re-setting idea is familiar but worthy of any new version. There probably isn't any neuro-inflammation in ME/CFS but there does seem to be a...